[chaos]

I'm having a hard time finding people on the SCS Pain Pump forum. They seem to all have SCS's!

I had the test drive last week and it was wonderful! All for about 6 hours my feet felt like they were supposed to. If my bad hadn't hurt I would have done something that required standing. I did stand in line at the sandwich shop, when I told the doc that she was impressed, we both knew how long that line normally is.

It is for Prialt. I know the risks of this drug. So as long as I don't go psychotic, all will be fine. Well, not really, but you guys know what I mean. I do worry about short term memory issues, I had some when I went on one of my meds now and got through it, eventually it got much better once I got used to it.

I'm wondering if anybody has one, where did they put it? Above or below the waist? I'm thinking above because I'm pretty curvy and the only spare space in my clothing would be there.

How long were you out of work? Doc says it'll be a week at max.

[RSD ME]

Hi Chaos. I've never tried the SCS or had a pain pump but hope it helps you. My thoughts are with you. Take care.

[Djhasty]

Chaos,
I have a Medtronic's pain pump. Mine is filled with baclofen for my spasticity. I discussed Prialt with my pain management Doctor when I was in California over the past several weeks. I will be talking with my Neurologist about it when I see her next week. She oversees my pump and refills. From what I understand Prialt and baclofen can be mixed together in the pump. I believe this would be a good option for me. My pump is at my waistline. It does move around a little bit but is still comfortable there. The pump was a good option for me because I was on the maximum dose of baclofen. By administering it directly into my spine I can get a smaller but more affective dose for my spasticity. I do supplement the baclofen with oral on particularly bad days.

Chaos, I hope the pump continues to work well for you. Definitely a little less pain is great when dealing with CRPS/RSD on a daily basis. Thinking positive thoughts for you.

Originally Posted by chaos

I'm having a hard time finding people on the SCS Pain Pump forum. They seem to all have SCS's!

I had the test drive last week and it was wonderful! All for about 6 hours my feet felt like they were supposed to. If my bad hadn't hurt I would have done something that required standing. I did stand in line at the sandwich shop, when I told the doc that she was impressed, we both knew how long that line normally is.

It is for Prialt. I know the risks of this drug. So as long as I don't go psychotic, all will be fine. Well, not really, but you guys know what I mean. I do worry about short term memory issues, I had some when I went on one of my meds now and got through it, eventually it got much better once I got used to it.

I'm wondering if anybody has one, where did they put it? Above or below the waist? I'm thinking above because I'm pretty curvy and the only spare space in my clothing would be there.

How long were you out of work? Doc says it'll be a week at max.

[mmrt12@aol.com]

hi my name is Marta I have a Medtronic PAIN PUMP WITH DILUID: IVE HAD IT FOR 12 years. Its help me a lot but now its giving me problems.

[moosey2me]

Originally Posted by chaos

I'm having a hard time finding people on the SCS Pain Pump forum. They seem to all have SCS's!

I had the test drive last week and it was wonderful! All for about 6 hours my feet felt like they were supposed to. If my bad hadn't hurt I would have done something that required standing. I did stand in line at the sandwich shop, when I told the doc that she was impressed, we both knew how long that line normally is.

It is for Prialt. I know the risks of this drug. So as long as I don't go psychotic, all will be fine. Well, not really, but you guys know what I mean. I do worry about short term memory issues, I had some when I went on one of my meds now and got through it, eventually it got much better once I got used to it.

I'm wondering if anybody has one, where did they put it? Above or below the waist? I'm thinking above because I'm pretty curvy and the only spare space in my clothing would be there.

How long were you out of work? Doc says it'll be a week at max.

If everything goes well,I am going to try the trial pain stimulator in about 2 months..Good luck to you..

[moosey2me]

Originally Posted by mmrt12@aol.com

hi my name is Marta I have a Medtronic PAIN PUMP WITH DILUID: IVE HAD IT FOR 12 years. Its help me a lot but now its giving me problems.

what type of problem??If you do not mind sharing...I am really at the learning stage about the pump..I have had RSD for almost 4 years..Jan.24....thank you

[tratom67]

Hi everyone, I have had my pain pump for 9 months and I have Prialt and Baclofen and boy have I had 9 months of misery.
My trial of Prialt went great and that's why I decided to get this hockey puck put in - first it started with stiff neck and they quickly sent me to the ER and had me frantic that I had Meningitis, then I was seeing purple - yea, purple, all the time - it was crazy. They lowered the Prialt but I was still in pain and having the same amount of muscle spasms so they added Baclofen but 9 months in I am still in the same place before it was ever added, except for all the side effects: vertigo, brain fog, nausea, bursitis in both hips, shortness of breath, constipation, hands and arms going to sleep, and the feeling of ice running through my veins.

I just had the Prialt removed and the Baclofen increased by 50% so I am in the wait and see stage again - it seems as though I live in the wait and see stage!

I would love to hear from someone else out there who are or have gone through the same things!

Thanks for listening!

[eevo61]

Originally Posted by chaos

I'm having a hard time finding people on the SCS Pain Pump forum. They seem to all have SCS's!

I had the test drive last week and it was wonderful! All for about 6 hours my feet felt like they were supposed to. If my bad hadn't hurt I would have done something that required standing. I did stand in line at the sandwich shop, when I told the doc that she was impressed, we both knew how long that line normally is.

It is for Prialt. I know the risks of this drug. So as long as I don't go psychotic, all will be fine. Well, not really, but you guys know what I mean. I do worry about short term memory issues, I had some when I went on one of my meds now and got through it, eventually it got much better once I got used to it.

I'm wondering if anybody has one, where did they put it? Above or below the waist? I'm thinking above because I'm pretty curvy and the only spare space in my clothing would be there.

How long were you out of work? Doc says it'll be a week at max.

Hi Chaos!
Hello everyone,I don't have a pain pump but had a scs from boston scientific ,works well during the trial,but also depends in the positioning of your generator,my gave me hard time for a year was on my buttocks,a real pain,still with pain,was repositioned this past January to my abdomen since then work well but the damage on my buttocks area is still my big concern,ask your dr what options you have in positioning any device,I did not have that choice if I can turn back the time,I will decide the abdomen for sure.still today I can't be seating for more than an hour and one of my dr think that my sciatic nerve was damage because of that generator
I was curious about pain pump,but I heard about it after my scs surgery,do research first on anything,and remember not all the treatments works for everyone,blessings and good luck,Jesika

[eevo61]

Originally Posted by RSD RENEE

Hi Chaos. I've never tried the SCS or had a pain pump but hope it helps you. My thoughts are with you. Take care.

hi Renee ,if I was you ,I will think and rethink well about scs is a hustle,for real ,help but mentally and physically you pay a high price.blessings my friend and glad to see you, from Jesika